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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain behind a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually begin with sudden, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing records propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers published the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a